Monday, December 22, 2014

Christmas Stockings Done! and a BEN UPDATE

My girls can not give up the Christmas stockings!  They don't have to be hung by the chimney with care, they just have to be there!

So, today I did it.  All done.


A several weeks ago I wrote that the IVIG treatment had finally been approved by Anthem/Blue Cross because LAM research HR stepped in.  Well, the treatment is approved but they denied the "at home" company the doctors recommended BUT only if it is done by the company Anthem/Blue Cross wants.  And, then they didn't have time available before the Christmas Holidays and the holidays were an awful time for the family to tackle the whole thing.  So it won't be started until the new year.

There will be applications of the IVIG usually before the body starts reacting to the treatment.  It is rather complicated but the bottom line is that it is a way to build up his immunity.  Usually there is a very bad bout of headaches afterwards so medication is given beforehand to hopefully overcome that.

Ben has "PANDAS"  which is a long name for basically a strep infection that has gotten into the brain, goes dormant until his immune system gets a little low, then comes out and creates havoc with symptoms like OCD, tics, pacing, zoning out, and more.  He has missed tons of school through the years he has had it.  It took years for a diagnosis.  Although more is being learned about PANDAS all the time and more and more kids seem to be suffering from it, there is a lot that is mysterious about it.

Ben has been accepted into a study at Stanford's Lucille Packard Children's Hospital under Dr. Frankovich and Dr. Chen.  And here is where it gets really crazy.  Although the doctors and tests show that he has a brain infection that can very probably be helped by IVIG, we don't dare mention PANDAS because the insurance companies will deny treatment.  Anyhow I can go on a rant forever on that.

 But . . . the sleep studies results came in.  He gets as much as 6 hrs of sleep.  When a person goes into REM sleep, the body goes into a sort of paralyzed state.  Whenever Ben goes into REM sleep his legs still are continually moving which the doctors indicate that this shows brain infection.  Another indication that he needs the IVIG treatments.  Let's hope there is a date open soon.

The doctors have put him on daily antibiotics since August to help him fight infections till he gets the treatment and he has improved more since then than we have seen in the last few years so we are so hopeful.

This is an amazing picture of him because he was so totally "with it"!  We want him like this ALL the time!!

No comments:

Post a Comment